Posted on: Oct 6, 2010 01:37PM - edited Oct 6, 2010 01:38PM by sbsuebella7
I was diagnosed with DCIS, recently had an unilateral mastectomy. Lymph nodes were not involved. However the tumour size was 6.7 cm hence the nuclear grade III/III (high). The closest margin was 2mm.
Trying to determine if anyone has had a similar diagnosis and what was the follow up treatment, if any? Were you referred to a medical oncologist after the surgery? I appreciate that everyone's pathology report is unique. I am waiting for my receptor status results. If positive and already post menopausal is it necesssary to do an adjuvant therapy?
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Oct 14, 2010 07:53PM sbsuebella7 wrote:
Sorry for not responding sooner. I was persistent to find out my receptor status. Just was informed today that it is positive.Although my margins are documented as negative, I'm confused because the closest margin is 2mm. That can't be good. I am having a difficult time getting a referral to a medical oncologist and never thought that a radiation oncologist would be necessary.
Thank you for responding and hope the radiation is going well.
Oct 14, 2010 10:43PM speech529 wrote:
I had a biopsy in March and was informed that it was DCIS, Grade 3 with comedo cells and ER+/PR+ I did not have to wait for this information.
My BS immediately referred me to a plastic surgeon and radiation oncologist immediately so that I could be well-infomed about all my options (lumpectomy + radiation or mastectomy).
I started out with a lumpectomy but ended up like you with a uni-mx. There is no need for radiation if you opt for the mastectomy. I was referred to an oncologist also. I actually met with two oncos as the first one told me I had to take raloxifene (Evista) for 5 years. I wanted to get more information about what I needed to do in my situation. The second onco was very thorough in explaining the risk reduction and all the studies associated with risk, etc. I would get from taking raloxifene (1.5% reduction in risk of getting DCIS or cancer in the other breast). I opted not to take any meds.
The oncologist reiterated that my followup would include annual mammography and that's it.
I think you should get a referral to an oncologist and get your full path reports. DId they not test your tissue for receptor status when you had the biopsy or lumpectomy?
I was treated at Mayo and i thought my care was well coordinated and top-notch.
Oct 15, 2010 04:39AM mom3band1g wrote:
Ladies, please remember that a mast does not always mean rads can be skipped. Margins still come into play even with a mastectomy. It's all about the margins!
Oct 15, 2010 06:39AM lago wrote:
mom3band1g is correct. You would be surprised who many women with mastectomies need radiation.
From what my PS said the rules for needing radiation has changed. He said there are so many factors they now consider they he can't keep up with it anymore. (As a PS he of course has a strong interest in radiation since it is something he needs to consider when treating his patients).
But yes margins are part of it but only part. It is also recommended that large tumors (over 5cm) get radiation but not all the time. Positive lymph node status is also seems to get radiation.There are many more parameters but of course I'm no radiation oncologist.
Oct 15, 2010 08:52AM Beesie wrote:
The criteria for whether or not radiation is needed after a mastectomy for DCIS is pretty simple - it's the size of the margin. The size of the tumor does not come into play. And lymph node invasion does not come into play because lymph node invasion can't happen with pure DCIS.
Based on current medical practice, those who have positive margins after a mastectomy for DCIS are very likely to require radiation. Those who have margins that are 1mm or less may have radiation recommended. Usually if margins are greater than 1mm, radiation won't be recommended.
The criteria for radiation after a mastectomy are quite different for those who have invasive cancer. Even the margin considerations might be different since there's likely to be a higher risk of recurrence if there is invasive cancer within a couple of millimeters of the chest wall, vs. DCIS.
Oct 18, 2010 07:30PM - edited Oct 18, 2010 07:31PM by AmyD
I had a unilateral mastectomy in 7/09 for grade 3 DCIS, 4.5 cm. I saw a medical oncologist and had a second opinion medical oncologist as well---wanted 2 opinions on Tamoxifen and opted out of taking it. I get alternating mammogram/MRI every 6 months, which is nice because I am having some type of follow-up every 6 months. I would recommend an appointment with a medical oncologist for sure.
Nov 11, 2010 09:37AM - edited Nov 30, 2010 07:20AM by 2Nan
I had a blmx on 10/27 after having had a lumpectomy, I did not get clean margins from the lumpectomy(5mm), an additional 6mm section of breast contained non-invasive dcis insitu grade 2-3 solid and cribriform, My surgeon suggested radiation based on the extensive amount of dcis even though I now have a 6mm clean margin all the way around and she also is sending me to an oncologist with the possibility of having hormonal therapy as I was ER and PR receptive. I have very mixed emotions about all of this. I think I will pass on the on the radiation but am still confused about the tamoxifen, guess I'll wait and see what the oncologist has to say.
Update to my comment, I went to the medical oncologist and she did not recommend The Tamoxifen, even though I was ER and Pr positive, her reason was I already had a hysterectomy and the benefits of Tamoxifen would only be about 1-3% for me so she felt the side effects of the drug would not make it worthwhile,also the BS made me so flat from the BMX that there isn't much breast tissue left. I hope you are doing well.
Nov 11, 2010 07:00PM Kitchenwitch wrote:
I've had three excisions for DCIS that was originally thought to be one spot, less than 1 cm. Apparently there is lots of microscopic, multi-focal medium- to high-grade DCIS that is visible only on the path reports, so I am very reluctantly having a unilateral mastectomy next week. There is a 50-50 chance according to my BS that I will need radiation afterwards, and I am a) grateful to Beesie for all the info on this and the heads-up that this does, indeed, occasionally happen and b) pissed beyond all imagining.
I hadn't even thought of Tamoxifen. My neighbor is one of the "lucky" ones. She had a mastectomy, immediate reconstruction without complications that she is very happy with (she looks fantastic) and, as she keeps saying, she is done with treatment.
I don't even think Tamoxifen would be safe for me because I have a predisposition to clotting. So that would be a really miserable thing to have to worry about.
Nov 11, 2010 07:43PM bher wrote:
I had a unilateral mastectomy(skin and nipple sparing) with TE in early September for what was thought to be about 4cm of DCIS. Basically almost the entire breast was affected with 1mm or less margins. I had additional surgery in early October to remove the nipple. More DCIS with positive margins from the second surgery. Now I am starting radiation because of close and positive margins. I am very nervous about the radiation because I have a tissue expander in place. I was really hoping to avoid the radiation. Tamoxifen is also recommended for me for ER and PR positive.
Nov 20, 2010 10:28PM jamiehop wrote:
dasiy6: did you have a bilat mastectomy? which margin was close? did they site any recurrence risk when recommending to pass on the radiation? and had you done immediate reconstruction? ...in case you're sitting around wanting to ask some questions... :)
my margins (both chest and skin) are < 1mm. my first opinion was no radiation and my 2nd opinion (from the Mayo Clinic radiation oncologist) was "on the fencee". She's asked four colleagues (also radiation oncologists) and got 2 yeses and 2 nos. Just wondering if you have any data I don't. The first tumor conference said no radiation, the second tumor conference (Mayo clinic) said yes to radiation but it turns out that there weren't any radiation oncologists present. One more tumor conference on Tuesday, then decision time!
Nov 23, 2010 07:53PM kbh2010 wrote:
Diagnoised Dcis stage 0 close to chest wall and larger then .5 cm area in right breast Had to have mastectomy .I chose to do the left one also.So had double mastectomy with 3 lymph nodes removed 10-26-2010.Pathology report states total size multiquadrant,extent of disease multiquadrant (lower inner and upper inner )largest focus2.5 cm,margins close 0.1 posterior single focus,linear extent of involment .2 cm
nuclear grade High
estrogen receptor yes
My question is I have been told I need no other therapy other then seeing him every 6 months that cancer gone and dont have to worry about it..Is this normal with the this kind of pathology.Everyone I talked to except doctor said I should be having hormonal,rad or chemo..Can anyone share their experience with.I have never posted on something like this Im not sure if this is where i should be posting
Nov 24, 2010 12:31AM Ina wrote:
You have definitely come to the right place. The women on this site are wonderful, and full of help.
It sounds as though you had multifocal DCIS--was that the reason for the mastectomy?
Were the lymph nodes negative? That's essential information, because if any were positive, you have an invasive disease, not just DCIS. That would affect your treatment.I suspect they were negative, since the doc seems to think you are ok.
When you refer to "him," do you mean the breast surgeon? If so, I would recommend you find a medical oncologist to see on a regular basis. I expect to see a medical oncologist the rest of my life, even though the cancer is all (hopefully) gone. A med/onc can talk to you about tamoxifen and radiation and whether you would benefit from either.
If it's truly DCIS and the margins are clear, you won't need chemo.
Nov 24, 2010 05:09AM mom3band1g wrote:
You never need chemo for DCIS, if your margins were good no radiation would be needed, and since you did a double mast Tamoxifen would most likely not be needed either! HTH.
Nov 24, 2010 08:02AM J9W wrote:
I have the same as you - DCIS Stage 0 Mastectomy - all took place in 2009. In Nov 2009 I started tamoxifen and in October 2010 I stopped taking it. I am having severe bone pain - all over my body. I had read that this was a side effect of tamox but didn't really put two and two together. I see my onc in another two weeks and I'm going to let her know the new plan is: mri and mammo every six months. I'm done with drugs.
Nov 24, 2010 11:19AM - edited Aug 20, 2013 05:15AM by brazos58
I am in a similar Quandry just for different reasons. I had a 4mm small high grade comedo necrosis DCIS/ Atypical Lobular Hyperplasia.... negative hormone receptors/ neg Her2. Wide margins.... showed up as microcalcs on Mammo.
I opted out of Rads/ Had Bilat Mast's..... Radiation Oncology discharged me....says IM CURED.... My inner Nurse Voice..... ut ohhhhhhh ( 1-2% recur)..... He tells me no PET's/ MRI's....are needed. Just to see my Breast Surgeon every 6 months for chest wall checks...
Wishing you answers too...
And any thots on my sitchy would be appreciated....
Nov 24, 2010 12:07PM JAT wrote:
I, too, questioned my BS and oncologist when they said no need for any follow-up other than physical breast exams every 6 months-- but I have 2 sets of hands examining me and they are spaced out thrrough the year (do you see a medical onc?)- I still see the oncologist, who does blood work once a year, too. If I had silicone implants (I chose saline), the PS would do MRIs. The others say no to MRIs because too many "false" things are picked up and lead to unnecessary biopsies. I've already had a biopsy on an underarm node in my prophy side that led to a permanently pinched nerve, and multiple ultrasounds on spots on my cancer side that felt weird to me-- so when I do have an issue, they certainly follow up on it. Yes, when they say 1-2% I'm not as reassured as they want me to be-- why wouldn't that 1-2% include me?
Nov 24, 2010 01:13PM - edited Aug 20, 2013 05:15AM by brazos58
Thank you,,, for your thoughts. I am as not reassured as well. I found the whole DCIS pathology to be downplayed greatly.
I did not have anything but BLM and no Medical Onc as I needed no hormonal intervention. I had no Lymphnode Issues ..... just 2 Mastectomies.....
I don't know if it would be protocol to bring Med Onc in, as Rads Onc, and BS say I don't need Med Onc for my Sitchy.
if you / anyone have any time could you ponder with me?
Beesie if you have any time for pondering my sitchy, it may give me some clarity. Of that you have given me/ all of us much OF,
Nov 24, 2010 08:28PM kbh2010 wrote:
Hi thank you all for all your responce so for ..I have one other question.I keep hearing margins what does this mean.my pathology report says: involvement of surgical margins:close,(o.1cm),posterior margin.
If margin close: single focus.
Does anyone know what this means.Again I just had bilateral mastectomy stage 0 dcis no lymph node involvement,prog +.estr + high nuclear grade with comedonecrosis.Have been told im "cured' no further treatment..I do not understand that.
thank you for any advice
Nov 24, 2010 08:55PM - edited Nov 24, 2010 09:01PM by brazos58
I believe your surgical margins are the " distance " measured from the Cancerous cells and how far away it is until the Pathologist "See" normal tissue under a microscope. The closer the margin to the Cancer, say there is not a whole lot of room.... is something to be concerned about, and finding out clearly what your margins are is something to ask your Dr, to clarify for you.
I was told I was cured of my DCIS comedo necrosis by having a Bilateral Mastectomy as well. ( Even tho there is a 1-2% recurrance rate actually....) Also I was told I need no further treatment other than seeing my Breast Surgeon every 6 months for 5 years. I am ER/PR -
I see your are Estrogen positive, and Progesterone positive ( ER/PR + ) I would question your Dr. regarding that as well. And where to take things from there. Often times they may treat you with medication when tumors test postive for Hormone markers.
If anyone can clarify this or if I have not given clear information,please correct me. But this has been my experience as an RN getting hit with Breast Cancer.
Hang in there.... keep asking questions..... Read as much as you can in the DCIS Forum and esp. Beesies explanations of DCIS.
Hope this helps you.
Dec 3, 2010 08:39AM 2Nan wrote:
Hi ladies, One thing I have noticed about all of these forums is most posts are from people who are new or have only had a minimal time of dealing with their diagnosis, only a couple of people have been around for a long time.. One thing I wanted to share was that I have talked to a lot of people and especially those who have had DCIS and the good news is, most of them and I am talking people who are 10-20 years out from having had a mastectomy, say they have not had any further issues with the DCIS, each one may or may not have had radiation,or had to take hormonal therapy,some did not have to have any further treatment other than follow up with the Breast Surgeon but they have all survived and I think that is good news. I hope you find this encouraging, I DID hugs to all you wonderful people and many blessings
Dec 10, 2010 03:02PM whisper2010 wrote:
Diagnosed with DCIS. Decided to do double mastectomy. They ended up finding DCIS in other breast and micomatasicy in one of my sentanal nodes. They then removed 11 more nodes and they were negative.
I went from DCIS to stage II. I have now done my 2nd TC treatment, two more to go and no radiation.
I am reading a lot of people who know they are ER/PR positive or not. My doctor did not test me for this? so many more questions.
Dec 10, 2010 03:23PM cmcollom wrote:
I was diagnosed with DCIS in May and had mastecomy in Aug on one side. The tissue biopsy found that I actually had Stage I. I had the DIEP reconstruction. I'm healing well physically, but seem to be on a roller coster ride of emotions. I don't want to talk to people because they don't need to hear my worries. I am single and feel very lonley. I have a real hard time hearing myself say I had breast cancer. It just seems so big, and I don"t think of myself as having something that big. I don't see myself as a "survivior". All I have done is go where the doctors have told me to go. It's all so confusing.
Dec 10, 2010 06:47PM - edited Aug 20, 2013 05:22AM by brazos58
Whisper, you may ask for a copy of your pathology report, maybee its on there if you are not sure? That information is very important to know. Best Wish's to you.
CMCOLLMOM.... Welcome. You have come to the right place for advice, support, and a haven that you can't always find in THE REAL WORLD.....I had Bilateral M's in June. I found I hit bottom 3 months after.... and I am doing a bit better on the emotional RollerCoaster at 5 months. Its hard to talk to people, and hearing the words " I have breast Cancer" .... i think alot of us/ and myself included take a long time owning those words.... i have just owned them a little at this point. Its bigger than I knew. I also am confused, alot. My whole life/ world is just not the same.
Sending you comfort, strength.... and light to see you thru.
Remember you are never alone. Stop by here more often.
Dec 10, 2010 07:18PM kelben wrote:
My tumour was 2x3cm in situ and infiltrating, no nodes involved., and clear wide margins. I had mastectomy and 4 rounds of chemo. I think with the tumour insitu means that it is in place no fingers spreading out and therefore when it comes out the medical oncs. feel it isn't necessary to rad or chemo it. ?? Does that sound reasonable?
Dec 13, 2010 07:35AM 2Nan wrote:
to Kelben, Why did they give you chemo if you were insitu, I am very confused, not the usual treatment, did they find something else. Was it because it was infiltrating??? What does that mean???
Dec 13, 2010 09:13AM - edited Aug 20, 2013 05:23AM by Beesie
2Nan, you'll notice on Kathy's (Kelben) diagnosis line that she's Stage II. That's because she had both "insitu and infiltrating" cancer. Infiltrating is another word for invasive.
It's very common to have both DCIS and IDC together. When that happens, although the DCIS needs to be removed, the diagnosis and treatment and staging is all based on the type and amount of IDC. The IDC is the more serious condition; the DCIS in effect becomes incidental and often isn't even discussed with the patient (although it would be noted on the pathology report). Anything that is done to address the IDC will be more than sufficient to take care of the DCIS.
Kathy, to your question, although DCIS cancer cells cannot move outside of the breast, they can spread around within the ductal system of the breast. The role of radiation is to kill off any random cells that might still be left in the breast after surgery. So radiation often is given to women who have DCIS. Chemo, on the other hand, is a systemic treatment - it's used to kill off cancer cells that might have already left the breast (prior to the surgical removal of the cancerous mass) and moved into the body. Because DCIS cancer cells cannot move outside of the breast, chemo is not required for those who have pure DCIS.
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